Dedicating a fun event to benefit a very ill child in need, has the power to make a dramatic difference in a 10-year-old's life. So is the decision to ask for help.
On Friday, June 1st, Oswegatchie Elementary School students and staff performed at their annual talent show. There was a variety of very entertaining Disney-themed acts, including a combination of high energy and soulful singers, dancers, musicians, gymnasts, martial artists, hula hoopers, jump ropers and even a twirler. The teachers and staff also delighted students and the audience with their choreographed ensemble routine.
The original plan was to donate all of the show's proceeds toward the Cactus Jack Foundation. But when members of the Oswegatchie school community learned that fifth grader Emily Feldman is currently fighting a rare health condition known as Moyamoya disease, Kim Saucier, one of the teachers involved with directing the talent show immediately proposed to Amie Guarraia, fellow teacher and director of the show, that they approach the school's principal about splitting the proceeds between the two worthy causes.
According to the Mayfield Clinic for Brain and Spine, Moyamoya disease is a disorder caused by blocked arteries at the base of the brain, a life-threatening condition that requires Emily to undergo surgery that focuses on reducing risk of stroke and restoring blood flow to the brain. The name "moyamoya" means "puff of smoke" in Japanese and describes the appearance of the tangle of tiny vessels that form to compensate for the blockage. In the United States, the risk of developing Moyamoya is less than one in 100,000.
When Oswegatchie Principal Nancy Macione announced that the event had raised a total of $1,311, Cactus Jack Foundation's representative Tim Gigliotti joined her and Amie Guarraia on stage to accept the check on behalf of the foundation and the Feldman family. He went on to surprise everyone by stating that Cactus Jack Foundation was not only donating their half of the proceeds to the Feldmans, but was matching it as well.
“Emily is so happy to know that so many people care about her,” said Andrew Feldman, Emily's father. He said at first it was very difficult for Emily to let people know about her health condition. She didn't want to be labeled as different from everyone else. But it became very important for her teachers to learn about her health challenges and to work around it as a matter of precaution.
The Feldmans also worried about the cost of the extensive medical treatments that Emily will be soon undergoing.
“It's been a tough year,” said Feldman. “I was unemployed for 6 months and recently got a new job so I'm just getting back on my feet.”
Although his wife is employed as a nurse, she will need to take a leave of absence to care for Emily post-operation and there will be a lot of travel involved between their home in Waterford and Boston Children's Hospital where Emily will be treated.
“At first our family felt it was best to keep everything private, for Emily's sake,” said Feldman. “But the more we opened up to people that we are in need, the more I realized that we have to learn to accept support in over to triumph over adversity. It has made all the difference in the world for Emily and my family.”
Feldman credits a physical therapist for pinpointing the true source of all of Emily's health issues. She was there at the recommendation of doctors after she complained of severe foot pain. After observing that one side of her body was significantly weaker than the other, the physical therapist urged that Emily receive some neurological testing. Over the past ten years, Feldman said Emily experienced some very concerning symptoms, from her inability to move one arm as an infant, to collapsing one day at preschool, to having vision, cognitive and hand eye motor skill issues in recent years. He said her primary care physician did not consider her symptoms serious because they were intermittent.
In hindsight, he wished that more diagnostic tests were done much earlier, but it became very clear to him that you had to have major symptoms and be in a life-threatening situation for insurance to cover testing expenses. It is now considered very likely that all of Emily's symptoms over the years were probably related. Emily 's fainting spells were probably mild transient ischemic attacks or mini-strokes due to partially blocked arteries in the brain. Eye glasses and orthotics for flat feet were not the answer to her problems.
The Feldmans consider the many blessings in Emily's situation. They feel fortunate that she has had few symptoms despite her advanced Moyamoya condition. As they await Emily's surgery date on the June 19, their main concern is to keep her hydrated, to keep her blood flow volume strong.
“Youth is on her side. I am thankful that she is young, flexible and malleable,” said Feldman. It was important to Emily that she not miss any school. Their family was thankful that she could continue to have some semblance of normalcy after she was diagnosed. She will have the summer to recover and look forward to resuming normal activity one month after the surgery.
“I have my faith and I appreciate the support of my family, friends and community,” said Feldman. “I feel like everything is going to be okay.”
You can help Emily in her challenge to fight Moyamoya disease by going bowling with friends and family at Holiday Bowl (also known as Spare Time) in Groton this Friday, June 8th from 7:00-9:00pm. Tickets are 12.00 each - call 860 235 4654 or e-mail arwenjinn@aol.com or just pay at the door.
To view Emily's Facebook site about her journey to overcome Moyamoya Disease click here: http://www.facebook.com/emilymoyamoya
For more general info about Moyamoya Disease click here: http://www.mayfieldclinic.com/PE-Moyamoya.htm
